The Down Syndrome Project

My child has Down syndrome.When he was born, I named the ominous piles of paperwork and referrals the ‘Down syndrome project’. My medical and resource folders are thicker than any project or assignment I’ve been given in my life. It is a condition which can have an increasing number of symptoms over time. This means intense and early intervention will ensure the best quality of life for Parker.

down syndrome project

Parker is two. When I used to think about his future as a newborn, words like, ‘independent living’, ‘behaviour management’, ‘thyroid maintenance’, ‘quarterly check-ups’, ‘funding support and planning’ came to mind. Having a child with a disability isn’t unlike running a small business. You have multiple support people to recruit, a team of medical staff to manage and engage with, specialists and therapists to hire and fire regularly.

You are told over and over again to ‘Build your community’. ‘Support is everything’.

down syndrome project I manage my son’s life in a number of ways. I use spreadsheets, stacks of paperwork, mail opening and sorting routines, family calendars and intricate negotiation skills on the phone to countless people rescheduling things at the last minute.

I try and limit gluten in his diet. I use well researched specialized supplements and I try and do what I can to enhance his health, as well as our own, without the additional time and costs impacting the rest of my family too heavily- or my own life.  Yet I research and dig deep in every forum I have, find the little ‘no nos’ and try and discover why aluminium is pure evil, or parabens should never cross your threshold.

Did you know we should all be drinking camel milk, on our organic farms away from the evils of wireless internet and aluminium foil and non-stick pans? For reals. These things are all ‘optimal’ for health and development. They really are.

Today I read something that had an impact on me. This was a mother of a child with Down syndrome- talking from the heart to a group of other mothers.

“Remember, they’re our children, not our projects. We’re mothers, not superheroes. We’re not here to save them. Just to love them, and do our best to take care of them.

As a mother, I believe my needs should generally come first, and I am working on putting my own ‘needs’ above the ‘wants’ of my children- this allows me for the most part to be healthy, happy, and parent exactly how I want to, instead of ‘as best I can under the circumstances’. Because my life is mine, too. It doesn’t belong to my daughter or son. I am not a martyr, and the decision I made to have children does not mean my entire life comes to a crashing halt until the day they become independent.

down syndrome projectI’ve written before about comparing this life to an exciting and rewarding work project. Yes, it feels like that sometimes.  But Parker is just Parker, not a recipient of some Down syndrome project. Now he’s older, I see that every minute of every day. When I start to feel the anxiety build and the options and paths start to feel limitless and infinite, I put down the spreadsheets and further reading, close my calendar app, order dinner in, and claim a squeezy cuddle from my wonderful, naughty, annoying, beautiful toddler.

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